Book Review: How to be Sick

This review is cross-posted at Survivor, Please Tape Me Back Together, and The Lovely Bookworm.

How to be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers
by Toni Bernhard

ISBN 978-0-86171-626-5
Paperback
191 pages



© 2010

Wisdom Publications


Health, Fitness, & Dieting > Disorders & Diseases > Chronic Pain

How to be Sick by Toni Bernhard

The title of this book, How to be Sick, might make some people think that the author is recommending ways to be sick.  It couldn't be further from the truth.  Toni Bernhard takes the reader through different Buddhist-inspired practices to accept being sick, to meditate while in pain, and to dwell in the present moment.  She was a law professor at University of California at Davis.  She became a practicing Buddhist years before becoming sick, and attending many retreats before than time.  In May 2001, while on a romantic trip with her husband in Paris, Bernhard contracted what she calls "the Parisian Flu," whose later diagnosis included Myalgic Encephomyalitis/Chronic Fatigue Syndrome, or ME/CFS, dysautonomia, as well as other illnesses.

How to be Sick takes the reader through change, acceptance, finding joy and love, transformation, and solitude.  One of the practices that helped me the most in this book was one that Bernhard learned from her daughter, that came from Byron Katie.  When the thoughts, worries, and pain become too much, this practice helps me to stay in the present moment.  Some other mindfulness practices I've found useful is to wear a half-smile.  One I've yet to try, but hope to soon, is mindfulness while making tea.  The ideas Bernhard gives the reader in this book are many, and with practice and research I think you could discover even more.

Toni Bernhard

This book was written in an easy-to-read style; even in severe pain I could understand it.  Bernhard speaks to the reader as if she is confiding in you, and after I finished How to be Sick I felt like I really knew Toni Bernhard.  The book is divided up into chapters and sections, making it easy to find what you are looking for when you go back to do a practice.  The cover features a big blue butterfly, which I found calming before I even opened the book.

Almost all of the information in this book was totally new to me.  I felt my eyes opened and could hear myself actually gasping "wow" when I read particular practices that resonated with me.  If you are chronically ill or the caregiver of someone chronically ill, I suggest this book as highly as I can.  It would work for anyone needing a bit of inspiration, as well.  This was a wonderful book.

Coping on good days

A lot of attention is drawn to coping with fibromyalgia and ME/CFS on bad days, as it should.  It is really hard to cope with fibro and/or ME/CFS on bad days, but what about the "good days?"  Are they easy to cope with?  Think about it.  On a good day is your health on your mind all the time?  On a good day do you still feel anxiety, depression, and preoccupation with your health or something related to your health?  I use the word "good day" loosely, but what I mean by the phrase is a day that isn't a bad day.  You can take it as meaning days you actually feel good or you can take it as days you don't feel as bad as normal.

I once heard a statistic that surprised me.  Often, you hear of the high divorce rates in times of crisis.  For some couples, it is easier to come together in times of crisis, it's the problems during the good times that ends their marriage.  I don't remember the actual numbers, but I had never thought of it that way before.  I think being sick all the time can be the same way.  Sometimes we can push ourselves so hard that we make it through that crisis, or flare, or whatever the difficulty is, we crash and burn because we don't know how to handle ourselves once the crisis is over.  There is even a name for positive stress; it's called eustress.

So how do we learn how to stay afloat on good days, too?  One thing that has helped me a lot is to read about my illnesses.  I've become an expert on fibromyalgia.  I don't think it is good to read about fibro and chronic pain management when you are having a bad day.  I think that when you are having a bad day, when you are really sick, you should put all your energy into feeling better.  When we are having good days, though, we have time to research our illnesses and pain management so that we can better cope when we are sick.

Gentle exercise can also help.  If you have ME/CFS you need to start off very slowly.  Even with just fibromyalgia, you need to start off slowly.  Some exercises recommended for fibro and ME/CFS are: warm pools, walking, yoga, and tai'chi.  Remember, this advice, along with all my advice is no substitute for a doctor and you should consult your physician before beginning any type of exercise regimen.

Cutting down on stress helps a lot.  There are many ways to cut down on stress.  I blogged about fibromyalgia and stress here.  My stress regimen includes medication, meditation, writing, talking to my husband, my cats, spoonie groups on Twitter and Facebook, and Cognitive Behavioral Therapy, or CBT.  I do all of these on good days, though not all of them every good day.  It sharpens my skills so that I can better deal with my bad days.

Sometimes it is during good days when the "why me?" hits the hardest.  That is a question that I will never be able to be answer.  Some people feel that they must be bad to have this much pain, they feel that they surely are being punished.  God isn't mad at you, and didn't give you fibro for punishment, regardless of the well-meaning (and sometimes not so well-meaning) people at your church.  Sometimes I get stuck at the "why me?" roadblock, too.  You just have to keep telling yourself you are a good person, and you are not alone in this.

We are hardest on ourselves.  I find this floating through my head a lot, "Why can't you walk without an assistive device, you're only 30, you must be lazy!"  Eventually I realize that if I were my best friend, instead of me, I would treat myself with more tenderness and more forgiveness than I show myself now.

I think it is very important to put together a "game plan" for when we get sick.  I'm going to cover my game plan for bad days in a different blog.  However, I made up my game plan when I was having a good day and could think clearer than other days.

There is still work to do on good days, to ensure that the bad days are better, and that you can enjoy your good days more.  Remember to take it easy, and don't overdo it, or you'll end up having another bad day.